We met with the oncologist today and said he had discussed the case with his tumor board and with the past trial oncologist.
He laid out several possibilities:
Keep going with Kadcyla and see what happens with the growing (and other tumors).
Irradiate the growing liver lesion and then continue with Kadcyla
Switch over to Carbo/Alimta + either Avastin or Keytruda. He suggests Keytruda would be the best since he suspects that while minor and asymptomatic my wife may still have the small brain lesions. If so, Avastin has significant brain bleed risks.
He thinks that the irradiation will only provide temporary, if any, relief since he suspects there may be more than this single lesion that is growing.
So, he thinks the best course at the moment is to switch back for 3 rounds of Carbo/Alimta (which he knows worked previously) with the added Keytruda (which has been shown in some cases to have additional effect). If it works, my wife would then go on Keytruda or ALimta/Keytruda maintenance. Of course both the Alimta alone and the (somewhat related to Keytruda) Opdivo alone were completely non-effective previously.
So, we are back to getting what was my wife's first chemo treatment with a twist, hoping the Keytruda will add a little something.
The oncologist also mentioned the possibility of Poziotinib down the line (about like the TAK my wife took previously, but hopefully with less side effects).
My wife is having an MRI this week (to confirm or deny the brain lesions) and a CT scan to see the current status of the lesions after the latest treatment and see if anything else is growing.
Once more.....back into the breech. I guess if there is one good point, it will get my wife off of any microtubule poisons for a few months, so hopefully the neuropathy will improve a little.
Wed, 10/16/2019 - 06:41
The MRI confirmed that the brain lesions are present and active - they are very slow gowing (about 40-50% growth after 12 months) - with a few more likely small spots. So, Avastin is not an option, and my wife starts on the Carbo/Alimta/Keytruda mixture next week.
In reply to MRI Positive by scohn
Sun, 10/20/2019 - 09:46
I too am sorry to hear that the trial drug wasn't effective, but I'm hoping for a great response from carbo/alimta/keytruda. It seems that quite a number of patients who have responded well to previous lines of therapy get a benefit from each new regimen.
We just saw our little grandsons a couple weeks ago, and I heartily agree with Janine's sentiment!
Jim C Forum Moderator
Wed, 10/16/2019 - 09:18
I'm so sorry to hear your wife has to change treatments and the trial drug wasn't so helpful. As I recall chemo was quite helpful for her but I don't recall if keytruda was in combo with alimta/carbo. Hopefully the combo will give a good hit to the tumors without too much added neuropathy. My husband just started taking gabapentin again. He goes on and off it in 3 or 4 month cycles which gives the side effects a chance to subside, then starts taking it again with a bit or relief.
I understand the smell of grandbabies is quite therapeutic. :)
All the best of hopes,
Sun, 11/24/2019 - 20:51
So, we are once more in a wait and see. My wife started to have a bad alergic reaction to the Carbo this last time. I found a couple of papers on Carboplatin reactions and one said the median number of treatments until patients start getting reactions is 8, and that's exactly true for my wife - it was her 8th treatment - 6 from her initial treatment 4 years ago, and her 2nd treatment now. Also, her liver enzymes went way up, which they feel is likely due to the immunotherapy (she had a brief bout of increased liver enzymes when she had her Opdivo treatment several years ago). She is now on some steroids to try and lower those liver enzymes.
So, it is likely that carbo is a no-go from here on in, but we are waiting to see the results of the blood test this next week (to make sure the liver enzymes are back down) and the post Carbo/Keytruda CT scan in about 2 weeks to see if the treatment was effective. If it was effective they will need to decide if they will try carbo/keytruda again, but give it with increased steroids or slower delivery to reduce allergic reactions, continue with just the Keytruda, or consider going to something else.
So....who knows what will happen next, but it looks like we won't know for sure for another few weeks.
But, the grandbaby sure is cute!
Tue, 11/26/2019 - 10:39
I'm sorry she had a reaction to carbo. I understand her willingness to try since it had been 4 years since her original carbo treatment, sometimes people fly through it with no issues. I hope her blood levels return to normal and I hope the treatment was effective. Keep us posted.
For the next few weeks at least, I know the grandbaby is the ultimate in wellness therapy. Enjoy the winter holidays I hope the whole family is able to enjoy time away from work and treatment.
All the best hopes,
Wed, 12/04/2019 - 10:44
The latest CT came back, and showed basically stability. The main liver lesion stayed the same size, although there does seem to be one small new liver lesion. Otherwise the CT appears basically the same. No lymph issues, no lung issues. Main issues seem to be liver and bone (hip).
Since the scan was stable (and not greatly improved) the concologist does not want to go with any more carbo after the reaction since the risk might be more than the benefit. The liver enzymes were still up, so they are holding off on Keytruda (may start that again after liver enzymes are down - not sure) and will just give Alimta this round. Alimta did absolutely nothing by itself a few years ago, so I don't hold out much hope for that - even with the Keytruda.
We will be meeting with oncologist as part of the Alimta treatment Friday, so we should know more then.
Thu, 12/05/2019 - 08:08
Basically stability is basically good news! Right? I can imagine how tenuous this all feels but I know y'all take a lot of joy out of life, friends, family and yes, cheesecakes.
Maybe alimta will work on these cells. It's been a few years and she has thrown a lot of cancer changing therapies at the cancer so hope that it will have efficacy is reasonable. How are side effects and symptoms?
Mon, 12/09/2019 - 06:46
Talked to the oncologist last week. He thinks the increasing hip/leg pain may be due to slight changes in the cancer there even though the CT scan doesn't show any real changes. He recommends seeing a radiation oncologist this week so they can determine if the should start some radiation in the hip to see if it helps. Liver enzymes are still up, and oncologist suggests this means the Keytruda is still active. Gave my wife the Alimta treatment, and wants to try another week on low dose steroids to see if liver enzymes go down, and hopes to restart the Keytruda once the liver enzynmes are down. If enzymes are still high next week he may suggest going on a higher dose of steroids.
Stability is good, but we will be watching the new liver spot, and watching for any growth in absence of carbo. The oncologist didn't really discuss future treatments if Alimta/Keytruda doesn't work, but my wife are keeping our eye on two other potential clinical trials.
Thu, 12/12/2019 - 09:09
I'm always hopeful that your wife will feel better soon. I look forward to the radiation oncologist's thoughts. Does her oncologist have any feeling about whether or not the keytruda still has an anticancer? I know there's been ongoing hope that it has a lasting effect after treatment ends (I don't know if there's any real evidence one way or the other about how or if that's so).
All my best,
Wed, 12/18/2019 - 21:39
Well, my wife has been on a treatment hiatus more or less until the liver enzymes go down. She has had a boost in steroids to help that along but that has involved many sleepless nights! The enzymes finally went down today and the oncologist wants one more week before we see where we are at and if the Keytruda will be started again. The hip pain is definitely getting bad on and off, so the radiation oncologist definitely wants to start soon (I think on the 30th) and thinks it will definitely help the hip pain. It is likely that they will wait until after all the radiation is done to resume Keytruda. But as I say, I have my doubts on whether the Keytruda is doing much, as I think most of the effectiveness was with the Carbo (which she can no longer take).
But there is no doubt that we have now come to the point where we are doing a treatment that is directly combating the effects of the cancer itself. Before it was just managing all the side effects of the treatments. A river has been crossed.
Thu, 12/19/2019 - 09:49
I know how frustrating it is to have to focus on treating the side effects instead of the cancer. (Grammarly doesn't want me to use "the" before "cancer". But since it specifies it's your wife's cancer 'the' is appropriate. I think. I'm just glad it's here to catch my spelling mistakes.)
I'm relieved to hear her liver enzymes are down and you can focus on anti-cancer treatment and work on her hip pain.
I want so much to say, hang in there, but since my niece railed against people when they said/say that to her I will only put it in this context. But you know... :).
If I don't hear from you before the new year. Happy New Year to You and Yours!
Fri, 12/20/2019 - 08:05
And a wonderful New Year to you! And to all those at GRACE. May your holidays be filled with happiness and joy, and may your graciousness and compassion to others be returned to you many-fold more!
Fri, 01/03/2020 - 18:21
Met with the oncologist today. Liver enzymes are still high, so he is upping the dosage of prednisone to try and get the inflammation of the liver down. Last blood test also showed some slight increase of bilirubin, so they want the liver inflammation to go down before they retry any Keytruda. They also are waiting for the radiation of the hip to be completed before they start anything else.
Oncologist also encouraged us to keep looking for potential clinical trials, as he more or less stated that the Keytruda/Alimta was kind of at the end of the road of the standard chemotherapies. Not clear what is going to happen, but I hope my wife will able to do the Tarlox trial.
So, I must admit that 2020 is starting with a bit of apprehension about what's to come, but we'll take one treatment at a time and see what happens. For the moment, increased prednisone, hip irradiation, blood retest next week, and possible liver ultrasound depending on the liver blood tests.
Sat, 01/04/2020 - 11:43
I looked up the tarlox trial. It sounds like it's made for her. Do the liver enzymes need to normalize more before she can enter that trial?.
I know how disconcerting it is not to have a plan in place.
HOWEVER, 2020 is the beginning of untold possibilities! and all my hopes hold hopes for your wife and you, et.al.
Take care of yourself Scohn!
Wed, 02/05/2020 - 13:07
CT Scan is back. As I suspected, once the carbo was taken out of the mix the Alimta and Keytruda has done nothing (except perhaps cause some inflammation requiring steroids which has caused other issues).
Scan shows growth in liver tumors and numerous new lung spots. We are making plans to get a workup and possible clinical trials at MD Anderson.
Our oncologist is essentially out of normal "standard of care" options. The tarlox trial is, for the moment, unavailable to TAK progressors. I am guessing our next option is poziotinib, but we will see.
Wed, 02/05/2020 - 16:02
Sigh, Sigh, and Sigh, I'm so sorry scohn.
Will the poziotinib come from an MDA trial? I just looked up its FDA approval and it looks like accelerated approval was denied.
I hope you and your wife find the next excellent treatment.
All the best hopes and wishes to you and yours,
Sun, 02/09/2020 - 05:29
So now we wait. Oncologist has sent for approval to get referral at MD Anderson and also sent a note to get Poziotanib via compassionate care. MD Anderson people have been really nice, but won't schedule anything until they hear up or down on insurance coverage.
My wife has not been feeling good, especially this last week, and she doesn't know if it's because of the slow withdrawal from the prednizone, the liver tumor progression, or other actual cancer symptoms. She also has been having some pain in sternum and spine (the sites of the first bone metastases, so we are pretty sure they are from cancer) that comes and goes. At least the the pain in the hip is now gone after irradiation. She goes from feeling pretty good to having fatigue and chills and pain, so we are hoping that at some of the issues are from the steroid withdrawal and will decrease as she gets lower dosages over the next few weeks. Hopefully we will know more within the next month. My wife's conversation with the oncologist was sobering and serious, and unless one of these trial drugs will work, well, we will have to see.
I will keep you updated as I know more.
Sun, 02/09/2020 - 09:39
Thanks for explaining the Posiotanib compassionate care situation and the sobering conversation with the onc. I hope lots of the issues are managed by prednisone titration. For all our problems with the insurance companies, it seems the best of them approve referrals for this type of situation.
hugs and hope,